Embracing life with chronic pain.

Posts tagged ‘life’

Living with Hidden Conditions

The most difficult part of living with hidden illnesses/conditions like Fibromyalgia, Polyarthralgia, Chronic Pain Disorder, IBS, etc. is trying to describe our conditions to those close to us.  I created the attached PDF to demonstrate how complex these conditions and their associated symptoms are…

LivingwithHiddenIllness

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Completely Unprepared

No matter our chronic condition/illness, our lives and the lives of those around us are forever altered.  We are stressed to our breaking point. The emotional toll overwhelms. We are in the midst of the most intense storm of our life.

We are tested at what feels to be beyond our limits as we battle our way through the health care system, working with our doctors to find some sort of relief to allow us to have a life of some kind…our loved ones and those close to us witness this first hand.

We embark on a new journey that is dictated by our bodies…grieving who we were and had hoped to be. We struggle to adapt…to accept the fact that we might be home bound, unable to drive, barely able to maintain good hygiene…yet we do.

Like me, you might have to fight for SS Disability.  Even with the assistance of an advocate/lawyer, this can be an arduous task.  My route went through denials…to a hearing…taking 26 months to finally have the Judge rule in my favor.  All the while, watching our resources dwindle to nothing.

I am thankful to be at this last step…awaiting the formal notification that will verify the monthly payment and solidify medical coverage.  Yet I am bereft of emotion…feeling hollow, raw…an empty shell…praying for this wave to settle quickly…knowing that this journey is far from over.

The War Within

Just as the thick cloak of nightIMG_7978

Hides the shadow

My body belies the reality

Of the war raging within…

It is bejeweled by the glistening stars

Twinkling like diamonds

Forming well known constellations

Whose paths were set to motion eons ago…

The path of chronic pain is arduous

It tests us in ways unimaginable

It attacks physically, mentally, and emotionally

Showing no mercy and no predictability…

It taunts with images of yesterday

It teases with thoughts of “normalcy”

Reality check…pain is real…symptoms are real

Yesterday is our distant past…

The challenge now is to create

To embrace our limitations

This is our new reality

To embark upon a unique journey…

 

Conversation with Self on Fibro Brain

“Deodorant in second drawer…”

Absently looking into the mirror…

“Mmm…”

I slowly turn to leave the bathroom.

“Deodorant in second drawer…”

“Oh yes! I must brush my teeth!”

I turn back around

The early morning light

Cascading through the window.

I shuffle out the door…

“Oh yes! Must brush my teeth!”

I find myself in the bathroom again

My eyes happen upon the toothbrush

Hanging quietly, waiting…

“Oh man!”

Chills hit my body

Drawn to my reflection, again,

I forgot to put on my sweater!

I carefully navigate to the closet.

A glance around the bedroom

I smile as I move toward the bed

Reaching down to collect my soft fleece.

My mind is screaming,

“What did I need to do?”

A long, heavy sigh

I carefully put on the fleece

And begin my slow methodic walk

To my comfy recliner.

I stop part way down the hall,

Slowly shake my head

Another heavy sigh

As I continue to my recliner.

My body falls into the chair,

Feet up with body stabbing and throbbing

I pull the blanket over me;

Waiting for the worst of the pain

To ease enough to rest my aching body.

I find myself as if frozen in time,

“Oh man!! I forgot to put on deodorant!”

The Fallacy of the Pain Scale

I am sure you recognize this graphic. We see this image in one of its various formats eachPain scale chart vertical time we visit the doctor.  For those of us “blessed” with chronic pain, it is a mute point.

I was ridiculed by the ALJ during my hearing yesterday because I have consistently been using the number 10 to describe my pain WITH medications.

Now let me attempt to describe this Pain Scale through the eyes of someone who is homebound and in constant pain.

Many years ago, a wise nurse tried to help me interpret my pain to be placed on this scale.  She simply said that in my situation, if I am noticing pain/discomfort that I am to respond with a 6.  If my day-to-day life is completely off kilter, I should respond with a 10.

Fast forward to the present. The ALJ’s understanding is that a “10” means you must be in the hospital.  I can hear the smirking of those with chronic pain. Our medical team is all ready doing everything possible to try to improve our quality of life…oftentimes, that means to bring pain within a tolerable range…like a 7-8! Reality check!  All they could do is attempt to overwhelm my system with medications that I cannot tolerate!  My combination of diagnoses do not have a definitive origin which has caused much frustration to my doctors and specialists.

I could hear the condescending tone when the ALJ responded to my description of Polyarthralgia.  He asked about Lupus, Rheumatoid Arthritis, etc.  All have been ruled out.  My set of diagnoses: Fibromyalgia, Polyarthralgia, Chronic Pain Disorder, Somatic Symptom Disorder, Pelvic Floor Syndrome, Neuralgia, Postherpetic Neuralgia, Paresthesia, PTSD, IBS-D, Colostomy; do not fit the norm.  My issues have been “unique” making my “special” (terms that I have heard so many times).  These are diagnoses that you are assigned when you do not test positive for something!

Why have I been answering “10” “Unimaginable/Unspeakable?  Let’s see…just a few thoughts come to mind…I am homebound, can barely move from the bed to my recliner, find no position to help relieve symptoms, have thick Fibro Fog (brain fog), have difficulty completing a sentence, experience Flares on a regular basis (riding in car to doctor appointment will set me back for days), cannot concentrate…these diagnoses have completely robbed me of a “normal” life.  How do you describe to an outsider the reality of being a prisoner within your own body that is complete with its own torture chamber?

The other important point, is that I am in the process of weaning off of the medications as we continue to fine tune my pain pump.  Here again, the ALJ just wanted to focus on the ONE visit where my pain level was actually down to a 9! The reality of that number was the result of the pain pump being implanted and still taking ALL medication!  The entire reason we fought SO hard for the pain pump was to offer me the hope of true improvement…NOT masking it by overwhelming my system with drugs!

The Fallacy of the Pain Scale

I am sure you recognize this graphic. We see this image in one of its various formats eachPain scale chart vertical time we visit the doctor.  For those of us “blessed” with chronic pain, it is a mute point.

I was ridiculed by the ALJ during my hearing yesterday because I have consistently been using the number 10 to describe my pain WITH medications.

Now let me attempt to describe this Pain Scale through the eyes of someone who is homebound and in constant pain.

Many years ago, a wise nurse tried to help me interpret my pain to be placed on this scale.  She simply said that in my situation, if I am noticing pain/discomfort that I am to respond with a 6.  If my day-to-day life is completely off kilter, I should respond with a 10.

Fast forward to the present. The ALJ’s understanding is that a “10” means you must be in the hospital.  I can hear the smirking of those with chronic pain. Our medical team is all ready doing everything possible to try to improve our quality of life…oftentimes, that means to bring pain within a tolerable range…like a 7-8! Reality check!  All they could do is attempt to overwhelm my system with medications that I cannot tolerate!  My combination of diagnoses do not have a definitive origin which has caused much frustration to my doctors and specialists.

I could hear the condescending tone when the ALJ responded to my description of Polyarthralgia.  He asked about Lupus, Rheumatoid Arthritis, etc.  All have been ruled out.  My set of diagnoses: Fibromyalgia, Polyarthralgia, Chronic Pain Disorder, Somatic Symptom Disorder, Pelvic Floor Syndrome, Neuralgia, Postherpetic Neuralgia, Paresthesia, PTSD, IBS-D, Colostomy; do not fit the norm.  My issues have been “unique” making my “special” (terms that I have heard so many times).  These are diagnoses that you are assigned when you do not test positive for something!

Why have I been answering “10” “Unimaginable/Unspeakable?  Let’s see…just a few thoughts come to mind…I am homebound, can barely move from the bed to my recliner, find no position to help relieve symptoms, have thick Fibro Fog (brain fog), have difficulty completing a sentence, experience Flares on a regular basis (riding in car to doctor appointment will set me back for days), cannot concentrate…these diagnoses have completely robbed me of a “normal” life.  How do you describe to an outsider the reality of being a prisoner within your own body that is complete with its own torture chamber?

The other important point, is that I am in the process of weaning off of the medications as we continue to fine tune my pain pump.  Here again, the ALJ just wanted to focus on the ONE visit where my pain level was actually down to a 9! The reality of that number was the result of the pain pump being implanted and still taking ALL medication!  The entire reason we fought SO hard for the pain pump was to offer me the hope of true improvement…NOT masking it by overwhelming my system with drugs!

Blessings

I had the pleasure of having visitors yesterday.  Being primarily homebound, it truly brightens my day!  It provides contact when we are on the sidelines…it is a blessing to be taken out of the day-to-day normal.

During our conversation we talked about how school was going for our kids, they shared their struggles as families to adjust to the new schedules which now include sports activities, practice, homework.  Observing their dedication as wives and mothers, I was struck by a powerful thought…”Do they realize how blessed they are?”

I sat listening…mesmerized by thoughts of going to a HS Football game, driving kids to various activities, preparing family meals. It was like a movie playing out those words as images flew past…again the powerful thought…”Do they realize how blessed they are?”

My brain has been so very thick with brain fog or Fibro Fog that it is next to impossible to put words to my thoughts. It has been a huge challenge to speak…but I could not ignore the seed that had been planted.

I am compelled to share some of these blessings:

  • Having more than one child.  (Do not take this wrong…being a parent of an only child is a huge blessing also!)
  • Driving your children to activities. (It is truly amazing to be able to get into your car and go! No day before and day of resting and naps to have enough stamina…not to mention the required ability to focus.)
  • Preparing family meals. (This act takes SO much energy…only the simplest of meals is made in our household…and that is after hours of rest.)
  • Attending after school activities like a HS Football game. (This is a dream…to be able  to drive to the game…to walk to the bleachers…to sit and cheer.)

What can appear to us as routine, mundane or hectic is often a blessing in disguise. It can take losing one’s health to fully realize the every day blessings that surround us.

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